Last time I tried to explain what the disease ALS does to the nerves. The bottom line is that I can almost no longer move anything - the keyword is tetraparesis - but I feel and sense everything as I always have. And also want to feel.
My girlfriend gave me a "scratcher" for my birthday, a telescopic fork for scratching skin and hair. You have no idea how incredibly good it feels to be scratched in my situation. It's one of those little things that you don't even consciously notice. A quick rub on the eye, a hair out of the mouth or a quick scratch on the head. It's madness, I tell you. My advice to you is to learn to appreciate that you can do all this. Enjoy it.
This inconspicuous masterpiece brings me to my topic today. I always talk about the fact that the sensation of pain does not change in ALS. But what does that mean? What was it like for me before? Where I am said to be into pain anyway.
Let's put it this way. I like it a bit harder. Some people don't scratch me any more, because I say, it's really not meant maliciously, but like right now, it tickles and doesn't make everything better. So
please tighter or not at all.
The cover picture shows my beard after one of the best scratching sessions ever. The friend who made it was a bit shocked when she took the photo. When she scratched me, she was lying behind me. She couldn't see the beard from there and was going by my steady "Fester...". I wonder how you document such scrapes in the daily curve. LOL.
In any case, the example shows quite well how I feel about pain. The disease has by no means made me as frail as my appearance would suggest. Whether it's storage, care, scratching... Because there's no other way, my girlfriend sits on me during sex. Apart from the fact that there's a urinary catheter stuck in my cock at the moment, which makes fucking a bit difficult. But you can leave your concerns about hurting me at home. The only thing that hurts in this matter is being treated like a raw egg.
Just for fun, I wrote down where on a scale of one to ten I would place which pain. Maybe that will give you a good idea. By the way, the normal storing and scratching is deliberately not even mentioned. That didn't make it into the ranking. Wink smiley.
| 1 | - scratch bloody with scratch and scratch very long on always the same spot - Turning on my own hand while storing and nearly breaking my arm in the process - I do not lie down at night, so that I lie on the same parts of my body and on the same ear for several hours. |
| 2 | - Lumbar puncture without anaesthesia (drain cochlear fluid with syringe for the laboratory)Pulling on the PEG until it bleeds from the puncture site - Mobilisation of an ingrown PEG -Laying a bladder catheter |
| 3 | - 90 minutes full body EMG (electromyography, inserting needles into muscles and shooting current through them to assess the electrical activity of the muscles). - Bladder infection lasting for four days - sit up in bed despite ulcer-infected PEG |
| 4 | - unsuccessful attempt to pee with germ-induced urinary retention |
| 5 | reserved for what is to come.... |
| 6 | reserved for what is to come.... |
| 7 | reserved for what is to come.... |
| 8 | reserved for what is to come.... |
| 9 | reserved for what is to come.... |
| 10 | reserved for what is to come.... |
